The pain was so severe that Samantha Irby was convinced she was having a miscarriage. Except for that pain, though, she had no reason to believe she was pregnant. After a lifetime of having what she assumed was just a weak stomach, something felt different. “I was kneeling on the floor in the bathroom and I was like ‘This is not a normal pain,’’ Irby, now 37, says of her 2005 episode. “I looked down and my stomach was distended, it was hot to the touch.”

A scan at the ER revealed that her intestines had swollen and twisted into a pretzel shape. After a two-week hospital stay, during which she had a capsule endoscopy (“You swallow a giant plastic pill that has a camera in it. It moves through until you finally poop the camera out. At the time I was too sick and scared to acknowledge how cool that is.”), she was given an indirect diagnosis of Crohn’s disease, an inflammatory bowel disease that is particularly rare among black people.

It took years of experimentation with lifestyle changes and drugs to get to remission, but the experience had a creative upside. A few years after her diagnosis, Irby started a blog called Bitches Gotta Eat, where she matter-of-factly detailed her bathroom-intensive life along with entries about friendship, dating, and sex. “I got messages from people who were like: ‘Thanks for putting a funny face on a thing that is not always funny.’ Once I started getting positive feedback I thought, ‘I can write about this more.’”

Since starting her blog, Irby’s has since published two books of essays, 2017 New York Times bestseller We Are Never Meeting in Real Life as well as Meaty, which is getting re-released by Random House in April. Irby is also working with TV writers Jessi Klein and Abbi Jacobsen turning Meaty into a comedy series for FX. Now living a quiet life in Kalamazoo writing and step-mothering, Irby spoke with Folks about the practical daily matters of Crohn’s and the doctor who made a difference in her life (even though she originally told him he was too cute to treat her.)

Irby is the author of We Are Never Meeting In Real Life and Meaty

Tell us a little about your Crohn’s disease. What are your triggers?

Rainy days—my body feels like it’s in traction sometimes. Super soft cheeses: they’re so delicious but I know that’s oing to be a problem. And, what will sometimes give me the hardest time is super healthy food like brown rice. I can’t. It just comes out looking the exact same and with a vengeance. If I sit and eat a bunch of carrots and hummus, which is delicious, I guaranteed I’m going to be in trouble later. That’s what’s so funny—sometimes when people catch wind [about your chronic illness] they want to email you all this unfounded advice. They’re trying to tell me what to eat and I’m like, “Great I get it,” but sometimes the only thing that will have the smooth ride all the way through is white bread, bananas and pasta.

You have joint problems an addition to the Crohn’s too, don’t you?

Yeah, peripheral arthritis, which is a degenerative joint disease. When my Crohn’s is active, the joint pain is excruciating. It’s like insult to injury to have to sit on the toilet all the time and have your knees hurt.

Your wife was a reader of your site before you married her. Do you think that helped her understand what you were going through.?

I think that at least having a base knowledge of Crohn’s makes some of the conversations easier. Like, I know you know I have diarrhea but you also need to know that if I need something from downstairs you might need to get it while I try to get my knees and joints together. So my blog gave her a good blueprint of what life together might be like.

Who were some doctors or practitioners who made a difference in your life? What did they do?

When I first went to the ER in 2005, I had to sleep with this Nasogastric tub up my nose. I was totally disoriented and had no idea what was up. The next morning, my super hot GI doctor came in and said, “Hey, I’m Dr. Mehta, it’s nice to meet you.” I was like: “No, you can’t be my doctor. I can’t be talking to you about my butthole!” He laughed and we hit it off.He really stuck to my intestines and not my myriad other problems.

It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you.

It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you. I went to the doctor for an ear infection a few months ago and I got a referral to the new bariatric clinic, and I was like “Okay…but can you just work on my ears?” Both he and Lori Jackson, my GP who it took me too long to find, were great because they stayed focus: “This is the problem we’re dealing with and this is what we’re going to fix.”

It’s so refreshing as a patient dealing with a long term chronic thing to have a doctor who wasn’t trying to shame me about my weight the time, especially when their job is to look into my mouth and butt all the time.

What resources do you wish you had when you were diagnosed that you didn’t?

I wish I had just known other people who were dealing with Crohn’s. That was part of my impetus to write about it. It’s one thing to meet up with a bunch of old men who have Crohn’s, but it would have been nice to know there were so groups for black girls with IBD. And it turns out there are—they’ve reached out to me, they’ve emailed me.

What advice would you give to other young adult women who are recently diagnosed?

Find a doctor you trust. Listen to what your doctor says and what your body says. Take other peoples’ advice with a grain of salt. Especially in the Internet age, as soon as you tell somebody you have something going on, the first thing they want to do is regurgitate some bullshit that they read somewhere. With gut disease, people don’t think of them as being real, so they say things like: “You just have a weak stomach, you just need to drink apple cider vinegar every morning.” Don’t listen to anybody else’s armchair advice. If it feels good and works for you, great, but don’t feel pressure to listen to that one person on Facebook who thinks he or she knows a lot about organic groceries.

Two years ago, when Nujeen Mustafa was sixteen, she left everything she had ever known to travel overland to Europe. Mustafa was one of nearly five million externally displaced refugees fleeing indiscriminate bombardment and humanitarian catastrophe in Syria’s civil war. Unlike most of them, though, she is unable to walk. Mustafa was born with cerebral palsy.

Nujeen Mustafa. Photo: Chris FLoyd

From her hometown of Aleppo all the way to Germany, she went in a wheelchair pushed by her elder sister, Nasrine. It was a flimsy device; the footrest was a piece of tied-on wire. In it she traveled for a month through half a dozen countries, braving border guards, smugglers, the elements, driven by an uncertain hope that they would not be sent back.

In Aleppo, Mustafa grew up in a working-class Kurdish family. They lived in a fifth-story apartment. There was no elevator. As she aged, it became difficult for family members to transport her down the stairs and eventually she stopped venturing out of doors altogether. Mustafa was intermittently homeschooled but mostly she learned things from watching television. Mustafa kept no friends her age. English proficiency was acquired through soap operas. By the time she left Aleppo she had never been on a train, plane, bus or boat.

Mustafa’s journey happened in stages. When her family left Aleppo, they were escaping violence instigated by their government. The Bashar al-Assad regime had heightened a military campaign against the city, Syria’s second largest and home to a key rebel stronghold. They fled to Manbij, another rebel occupied town. They had to leave after Islamic State militants conquered it, enacting a brutal theocracy. Women were forced to wear veils. There were beheadings. By car they crossed into Turkey, where they lived in Gaziantep, a seedy city in the south. Feeling unwelcome, they headed west for Europe.

For those with disabilities, the ongoing refugee crisis is tougher on nearly every level.

For those with disabilities, the ongoing refugee crisis is tougher on nearly every level. Yet despite their vulnerabilities, disabled refugees in the Greek islands, a major refugee bottleneck, are routinely overlooked in receiving basic services, Human Rights Watch reported in January; Shantha Rau Barriga, its disability rights director, described them as “an afterthought” of aid givers.

In the fall of 2016, the UN Refugee Agency announced it was giving special priority to disabled asylum seekers. They would be reserving 20 percent of their refugee housing in Greece for “vulnerable” people; most asylum seekers there live in camps. However, only 30 percent of that housing has been filled by the disabled, HRW found. The reason for this is thought to be Greece’s spotty system of identifying disabled refugees, which UN authorities have admitted has underreported the number of disabled refugees there. They have classified only about one percent of the over 27,000 asylum seekers in Greece as disabled, which is well below the expected estimate of fifteen percent.

Since making it to Germany in September 2015 Mustafa has started attending school for the first time. She is in the ninth grade. She has become a prominent voice for disabled refugees, giving numerous talks on the issue. She has been profiled in several international media pieces. In October, she published a co-authored memoir of her ordeal called Nujeen: One Girl’s Incredible Journey from War-Torn Syria in a Wheelchair. We spoke with her to find out more about her story and activism.

How long you been in Europe now?

I’ve been in Europe since September 2015. The whole journey here took a month. I left in August 2015 and arrived here in September.

Has Germany started to feel like home?

I’m getting Germanized in a sense, yeah. I feel more familiar with the whole system in general. I still feel a bit out of place. Until you learn all about the regulations and laws and how to socially behave, act, you do. But there are still some differences that I’d like to keep. I never wanted my identity to get erased. But I’ve started feeling more comfortable.

You are wearing braces. Did you get those in Germany?

Yes, last November. Hopefully I will get my teeth fixed as well.

How old are you now?

I’m eighteen.

Can you tell us about what life was like in Syria with cerebral palsy?

It was pretty difficult. I was born in the countryside of Aleppo but I grew up in Aleppo the city itself. I went outdoors like once in a year sometimes. We lived in a fifth floor apartment and didn’t have a lift. It was quite difficult, as I got older, to carry me. I did not want to cause much trouble so I gave up on going out. I became an introverted person. There was much loneliness. I had the neighbors, of course, next door, but they either left during the day or were much younger then me. So the side effect of that was that I was a friendless child. I grew up among adults, my uncles, relatives. There were often family gatherings at home. I never got the chance to attend school so I was homeschooled. Just the basics, the alphabet, bit of math, how to read and write in Arabic. Not much was expected from a disabled person in Syria. Special facilities are not as common as they are in Europe. Even if there are schools for the disabled, they’re really expensive. We could never afford it. That’s the reason that I was not attending school.

I was a friendless child… not much was expected from a disabled person in Syria.

My father retired from the workforce long ago. He’s 75. But he was a peasant. He would sell things. But he hasn’t worked in a long time. My mom is a housewife. She was really determined to get an education. She’s amazing at math. She’s amazing at geography. I wish I was half as smart as she is, even though she is illiterate. But she knows a lot. I think it was her determination to get an education that led to me getting my own education as well. My family just refused the idea of disability as an obstacle or an excuse for me to not getting an education.

How did you learn English?

I watched soap operas. With subtitles at first. But then gradually I noticed that I understood without even looking at the subtitles.

Which soap operas?

Days of Our Lives.

In America that’s popular mostly among grandparents.

I guess there’s an exception to everything right? One side effect of not attending school was that the TV became essentially my school as well as entertainment. I was watching it endlessly. I guess that my family did not like it that much but I had pretty much nothing else to do so they let me do whatever I wanted. I was left to watch documentaries. I became an information gatherer, just left to my bit of information collecting, fact collecting. I’m a big fact collector. I became a nerd. I love reading books. I would buy a book and finish it by the next day. I grew up introverted because I did not socialize much.

When did you leave Syria?

We left Aleppo in 2012 and immigrated back to the town where I was born. We were there until the beginning of 2014 when we left to Turkey and stayed there for a year. Then I set off on my journey to Germany.

How did you get to Turkey from northern Syria?

We went to the border and crossed in my uncle’s car. Then we stayed in Turkey for a year but decided that it was time for us to leave because there was nothing on the horizon. My sister could not go on with her education. My brothers could not find a job. Learning the language is difficult enough but as Kurds you are also not really welcomed. Turkey is so much more difficult when you’re a Kurd to get a job or be treated properly. It was not a very welcoming place. So we left because there was nothing on the horizon. For me the image of my future self sitting there doing nothing was terrifying. So when I was presented with this chance I welcomed it.

The image of my future self sitting there doing nothing was terrifying

My brother had left ahead of us and when we learned that the way to Europe was open we decided that this might be our only chance so we did it. We knew that we would soon run out of options if we waited. So we just left. I was sent with my sister to Europe. She’s nine years older than me. She pushed me across Europe. I left with a wheelchair. There was a group of relatives we left with, too. My parents stayed behind in Turkey. We were 38 people in total in the group, with 11 children.

What was the most difficult part of your journey in terms of your disability?

I think when we got to the point before we set off to the Greek side of the shore it was really difficult. Really rocky and hilly. The terrain was really difficult for a wheelchair so I had to be carried a lot. We spent the night there outdoors without shelter. This was at the point where you set off for the Greek side to Lesbos, before the dinghy. That was a really nerve-wracking period because there were a lot of children. We had slept there for a night already and the next day we were out of water. Had we had to spend another night there it would have been really difficult. I think that was the hardest part.

Another great difficulty was when I was detained in Slovenia for a day. We arrived in a bus to a military base. No WiFi or phones allowed. They told us we had to get off the bus. Everyone on the bus started losing their temper. They promised us that we would get out soon but of course we had no way to communicate so we got scared. It was really nerve-wracking because it was not the usual way people went. Normally it would have been Hungary. But the border was closed so we never made it to Hungary. That was a new way, a new route, unknown.

It was a two story building. There was an Iraqi group upstairs who did a hunger strike, or threatened one. There were a lot of ideas among the refugees about that. But it worked. We were released the next day.

That experience made me realize how precious freedom is. We were just detained. We could not go out and we were surrounded by police. It’s not pleasant, feeling unfree. There were people talking on the bus about someone they knew being detained for months, afraid they wouldn’t see the sun again.

No. Starting out, there was a debate whether we should bring the wheelchair or not. The group feared that it was going to puncture a hole in the dinghy. Carrying me would have been much worse because I was not a little girl anymore. I was 16 back then. Imagine what body strength it would take to carry me all the way through. So the wheelchair was quite helpful and I don’t regret bringing it with me. And I would be first in line if there was any queue because of the wheelchair.

From Gaziantep to Izmir, which was the starting point, everything was new–busses, trains, boats–which is kind of embarrassing when you’re already 16. But I considered it as a really good experience. And I would want to tell my grandchildren about something other than the war. I knew that this was a once in a lifetime experience. I did not want to waste it on just being stressed. I wanted to live my age.

The ocean crossing from Turkey to Greece was really your first leg of the journey into Europe. What was that like for you?

On that day things were done so hastily because they wanted to get the boats set off as soon as possible, when the sea guards are changing shift. Otherwise if they discovered you they would turn you back. Once the shift changing began the dinghy sets off all at once, so it’s done very hastily before the guards come back. On the day no one really noticed my wheelchair. I was just loaded into the dinghy.

Did you see many other disabled refugees on your journey?

Oh definitely. Our camp in Greece was filled with them. The main camp was not accessible for disabled people. So I was transported to another camp which was only for special cases and people who are waiting for their Greek residency. So I met some people with disabilities. To be honest I figured out that my situation was the best among them.

Why did you decide to write a book about your journey?

My intention of the book was to give an insight on this problem. When you think of this crisis it seems terribly far away. We as refugees are generally thought of as something on the news, a news report, not as people. I wanted to give people an insight into who we actually are, that we too have lives and want the same things. I wanted people to realize what it is to be a girl, what it is to be disabled, what it is to be Syrian, what it is to leave civil war–that I’m not a number but a real person.

We as refugees are generally thought of as something on the news, a news report, not as people.

My whole life, being so isolated and lonely, I wondered what I could do. I looked for my mission in the world, what influence I can make. Now that I have a voice, that I can speak, I thought maybe I can make a difference. So it’s essential for me to do this kind of activism because we matter. No one’s an extra number in the world’s population. Everyone has come into the world for a mission and I believe that is mine. And I’ll do my best to present that. All of us deserve much better I think.

You have just returned from Madrid. What were you doing there?

Cover of the Girl from Aleppo.

I was attending the annual general assembly of the European Disability Forum. It was an interesting experience, an opportunity to raise the voice of refugees with disabilities in particular and take a look at the general situation in Europe [for disabled people].

Do you have other plans in championing this issue?

I’m planning on starting a fund to focus on how to best help people here in Germany integrate, how to work with society and feel less foreign. I want to share my personal experience with others. I always think of myself as a guest here who has to be good to its hosts. The point of my focus would be to help Syrians in the best way I can but also help Syrians that are here how to best deal with a new society, culture and country.

What is your healthcare like in Germany?

I think we have the best healthcare in Europe. I get physical therapy three times a week. My therapist says that I’m improving, getting much more flexible. The name of my disability is tetra spasticity, which means the four limbs are spastic. We are trying to improve as much as we can but it’s not something that will suddenly go away. I am born with it. I just have to learn how to live with it. Therapy is making me more flexible and learn how to control the spasticity I have and make the best of my limbs to their highest potential, how to not make this disability a barrier between me and normal life.

Do you have an elevator now?

We live in a small house. It looks like a Barbie house. I’m pretty much happy.

We live on the ground floor so we don’t need an elevator. We live in a small house. It looks like a Barbie house. I’m pretty much happy. We live on the outskirts of Cologne. It’s really homey and cozy here, kind of gives you that fairy tale-ish atmosphere. I’m really pleased with where I live now. I have a few friends at school. Especially in my class.

What do you want to study when you go on to university?

I’ve always been interested in the essence of things so I’d love to study physics. Maybe become a scientist. Who knows, maybe an astronaut. I just hate gravity. Maybe I can find an alien and prove Hollywood wrong about the whole thing. They’re not just coming to invade the earth. I think it’s the biggest unsolved mystery. Are we alone? It has always intrigued me. Hopefully I can work on solving it.

Guatemala’s second largest indigenous group, the Q’eqchi’, are a justifiably proud people. Their traditional lands constitute the only Mayan territory never conquered by the Spanish. Q’eqchi’, also the name of their language, is the most widely spoken Mayan tongue in Guatemala.

Liza Grandia today.

Liza Grandia, an American anthropologist, first fell in love with Q’eqchi’ culture in 1993 during her undergraduate studies at Yale. Going on to live with a a Q’eqchi’ family in Guatemala for four years, she returned to write her dissertation, staying for another three years.

Living with the Q’eqchi’ is not an easy lifestyle. “Petén, Guatemala is a pretty rough place to work — heat, mosquitoes, parasites galore, dust, poor roads, bad water, and little to no sanitation,” says Grandia. But she took it in stride, because she believed her work, focusing on environmental justice and agricultural conflict, was important. While there, she even helped assist the Q’eqchi’ defend themselves from land grabs triggered by a World Bank loan.”

I was horrified that no one was working on these issues.

Nine years ago, after returning to the United States after seven years of living in rural Guatemala, she was diagnosed with an aggressive form of lymphoma. Grandia believes that the cancer likely grew out of her long term exposure to pesticides and other toxic contaminants found around the villages she lived in–several large resource extraction projects operated nearby.

Though there is no official registry of such data, Grandia believes that chemical exposure among the Q’eqchi’ is likely high. Grandia herself kept a detailed record of the pesticides she was exposed to. “I was interested because I was horrified that no one was working on these issues,” she says.

The diagnosis, which effectively ended Grandia’s career as a field researcher, set her on an intellectual journey investigating this issue: how chemical exposure might be quietly poisoning us. She was surprised to find that environmental factors were generally not considered in cancer diagnoses. When she informed multiple oncologists about her likely contaminations in Guatemala they were simply “not interested in the information,” she says. Her concerns have carried on into her new academic research.

“I’m interested in making that loop, the complete circle of poison back to our lives, the ways in which we inadvertently poison ourselves.”

Earlier last month Grandia was awarded a Mellon Foundation grant for $270,000 to study toxicology and environmental epidemiology at the University of California, Davis, where she is director of the Indigenous Research Center of the Americas. “I’m interested in making that loop, the complete circle of poison back to our lives, the ways in which we inadvertently poison ourselves,” she says. She also continues to work remotely with the Q’eqchi’ on a number of environmental legal cases as an expert witness.

Folks spoke with Grandia to find out more.Much of your current work was influenced by your own medical situation. Can you please take us back to your diagnosis?

I was diagnosed with a very aggressive lymphoma the day before my 35th birthday. I had a lump spreading on the top of my chest through my collar bone that grew from zero to ten centimeters in about a month. It was actually my first year as a professor. I was in my first tenure track job and right at the beginning of the second semester. Because the cancer was so aggressive either the chemotherapy would work or I had about two months, according to the oncologist. I haven’t really led an academic life outside of that reality.

That occurred in 2008. There hadn’t been a six month period between 1993 and 2008 that I hadn’t spent time in Guatemala. Sometimes it would be two or three years on end. So that was an abrupt shift for me to not be able to go to Guatemala for the better part of five years.

What first drew you to anthropology and why does it drive you? Why did you start focusing on the Q’eqchi’?

I was drawn to anthropology by the practicing anthropologists I met when I first went to Guatemala in 1993. I liked the kinds of questions they asked. They always seemed to have a quirky angle on whatever the proverbial elephant was in any given meeting room. That said, I did what no student should ever do: apply to graduate school in a field in which you’ve only taken one introductory class. Luckily for me, anthropology is my life’s calling and I landed at UC-Berkeley with the best possible mentor in the field, Dr. Laura Nader.

I was drawn to anthropology as a discipline for understanding problems of corporate globalization because I felt more than any other social science it had genuinely and honestly wrestled with its colonial past.

I was drawn to anthropology… because I felt more than any other social science it had genuinely and honestly wrestled with its colonial past.

In the four years I spent in Guatemala before graduate school, I had lived with a Q’eqchi’ family, worked in Q’eqchi’ communities, but had not yet learned the language. For my dissertation work, I committed to this and was rewarded with so many new understandings of Q’eqchi’ lifeways and worldview. This is a continually deepening process. Decades later, Q’eqchi’ healing and ceremony is helping me understand what I am meant to do as anthropologist.

In Maya cosmovision, a good life is one in which a person finds and fills her destiny. When you get a life-threatening illness like cancer, a person tends to question everything. What’s the point of all that suffering? What am I going to make of that experience? It’s taken me almost a decade to understand my path forward.

Has studying the way other cultures approach illness helped you in any way handle your own?

Absolutely. I never even considered putting all my eggs in the allopathic basket. Chinese medicine (acupuncture and qigong) were central to my recovery. The Mesoamerican tradition of sauna has been the cornerstone of my healing of chemical sensitivities. That said, it’s also a healing modality of Europe. You find many similar healing modalities that arise in disparate places at different times. Some old Maya healers practice a kind of acupuncture with sharpened bones, and they use very similar points to Chinese doctors. So I read copiously across many medical traditions and look for commonalities or comparable success stories.

What was your initial healing process like?

I had just moved to a new town, Worcester, MA. I didn’t really have a network of support, didn’t know where to go for treatment. From the very beginning I felt that the best way to cure myself was to be very public about my cancer. Some people take it very privately, like a scourge on themselves. But I never blamed myself. I sent out an email to 300 people asking ‘What do I do?’ Through that I pieced together connections to very good doctors.

I had long been an activist and worked with social movements. I’m very good at organizing on behalf of others but I’d never actually organized for myself. I took this as ‘How do I connect the people I know and use my intellectual firepower to heal myself?’ I wasn’t going to put all my eggs in one basket. I did chemo and radiation because it was a very acute cancer, but I also tapped into a lot of alternative therapies.

From the very beginning I felt that the best way to cure myself was to be very public about my cancer.

My original surgeon in Worcester wanted to try to cut out the tumor. I found out later that surgery would have killed me because it would have delayed the chemo and caused the cancer to spread. The night before the surgery a friend convinced me not to go. I called the hospital and cancelled. The doctor actually threatened me and said if I didn’t go through with the surgery I’d never be allowed back in that hospital again. I didn’t have health insurance to any other hospital so it was a leap of faith at that point. I had not seen any other specialists. Happily I found another oncologist. For six months I underwent chemo and radiation. I have been in remission ever since.What kind of alternative medicines did you tackle during your recovery? Did you feel more open minded about such treatments because of your training as an anthropologist?

Grandia during chemotherapy.

I mentioned saunas above. Healing is multi-layered and what works for one person at one time may not work for another. To be honest, I wasted a lot of money on supplements, though a few have been helpful. The most healing things have been the least expensive, and good, organic whole food is medicine in itself. Qigong was the cornerstone of my recovery from cancer and gave me an understanding of how to induce a relaxation response or shift the autonomic nervous system from sympathetic to parasympathetic state. When I fell ill with chemical sensitivity, for awhile, I focused heavily on detoxing and replenishing minerals. Then I worked on my lymphatic system and found old-fashioned castor oil packs and dry brushing to be transformative. I worked with western doctors to address glutathione deficiencies — glutathione is a master antioxidant and chemical exposures can deplete your store of them. I’ve always had a healthy diet, but I started learning about the brain-gut connection and probiotic foods and drinks made a difference in my cognitive function. Then I started learning about the limbic system and how to condition the amygdala not to go into flight-or-fight response so much. That is very much a work in process.

What has been your life been like in remission and how did your diagnosis change your academic and activist work?

Over the last nine years I haven’t gone six months without having a terrifying cancer relapse scare. It’s over but it’s never over. You never have a normal headache as a cancer survivor. One can never accuse a cancer survivor of hypochondria.

Five years ago I moved here to UC Davis. Given that I was in questionable environmental circumstances before the diagnosis it definitely caused me to reflect on the questionable long term exposure over a lifetime.

It’s over but it’s never over. You never have a normal headache as a cancer survivor.

What cancer researchers are finding is what they call a multi-hit model of cancer. The prior imagination of cancer was that there was this one thing that gave it to you, like asbestos or smoking gave you lung cancer. Increasingly it appears that many of the genetic transformations and things that happen at the cellular level which impair the body’s ability to repair itself can come from something that occurs over many, many steps. In fact the oncologist told me right away that because the cancer I had was so particularly aggressive, the mutation it had would have required a series of things to have gone wrong.

Is that when you made the link with Guatemala?

In my field work in Guatemala I was working with farming families. I was worried about the pesticides being used so I had been tracking them. I had a list of all the pesticides that were being used in the villages I’d lived in. I had done some initial research on that and presented a paper in Guatemala because the international organizations were really focused on biodiversity and didn’t really care about human health–there’s not a lot of information about the dangers of pesticides in Guatemala. So I was definitely aware of the connection with pesticides when I was diagnosed.

After diagnosis, with not being able to expose myself to pesticides, which, with rural fieldwork in Guatemala, there’s no way to avoid it–they stored pesticide tanks next to the bed in the hut I was staying in, for instance– it was clear I wasn’t going to be able to do that old fashioned anthropology anymore. I was thinking about how I could reinvent my work so I could be effective from my desk. Indigenous people are online and organizing in extraordinary ways, making use of digital tools. I had been thinking a lot of how I could be of use to indigenous groups facing environmental struggles without actually having to physically go. I knew that I had to learn the language of toxicology and policy, so I applied for this Mellon New Direction fellowship.What was the link you saw between your diagnosis and your previous agro-environmental work in Mesoamerica?

When you do chemotherapy, some of the drugs are so toxic that the nurses have to put on partial hazmat suits–an extra full gown, masks, thick rubber gloves–to actually handle the needles and the bags that they’re putting in your IV. You’re voluntarily poisoning yourself to hopefully get well. I had been, in the lead up to chemo, revising my book for publication in Guatemala about the World Bank inducing land grabs. The key legal principle which we were trying to use to stop the expansion of this World Bank project to the rest of the Q’eqchi’ Maya territory to the south was that the Bank had expanded the project without consulting the indigenous communities. They had violated the international legal principle of “free prior informed consent.”

After my diagnosis, I began thinking about that and then thinking of the possible causes of cancer, of the chemicals that we all have in our bloodstream without our consent. People in the United States are crazy about trespassing and privacy but don’t think about the things that corporations have put into the environment and then travel inevitably into our water and bodies, full circle.

I followed all the rules, like a lot of people who get cancer. But the institutions are looking at how to blame the individual rather than the… corporate economy.

I started tracking the companies that were responsible for the two main herbicides to which I know I had been exposed: glyphosate and 24-D. Monsanto makes glyphosate and 24-D was once manufactured by Monsanto and now Dow Chemical.

This was part of my externalizing the causes of my cancer. Folks have written a lot of literature about positive healing, but it sort of implies that you gave yourself cancer by thinking negatively. In the 1970s there was thought to be a type of person who got cancer–stressed and so forth. All of the American Cancer Society literature is about behavioral causes: you drank too much, you’re overweight. But I was a vegan, organic eating, exercising person–I followed all the rules, like a lot of people who get cancer. But the institutions are looking at how to blame the individual rather than the broader structural forces of the corporate economy. That’s when I began to think of the concept of “chemical trespass”, which led me to research about everyday chemicals in our bloodstreams.

What are your key goals going forward with furthering your activism and research?

I continue to do lots of pro bono expert witness work on behalf of Q’eqchi’ peoples. I think that scientists on campus have that capacity to do pro bono science work from their laboratories, if there is interest in it, but they don’t have a social connection. So I see myself as a connector. I hope to have a system and network and way of connecting groups that are facing emergency and environmental threats. They need to be able to connect with environmental scientists to get the soil, water and air quality studies that are needed to bring their cases before a judge. They need evidence, hard core evidence. Most native and indigenous communities don’t need anthropologists anymore to document their culture–they’re doing that themselves. But they do need connections to entities of power.

Top photo of a Guatemalan woman provided by Creative Commons license by Stefano Ravalli.

Under the active inspection of something called eyegaze software, Eric flicks his eyes across a digital display while an infrared camera tracks their movement and registers their precise location. When the screen displays a keyboard, a glance that lingers on a specific letter for half a second registers a click – this is called “dwell-time” – and letters populate the display.

To complete this interview, Eric wrote 26,038 characters over a series of emails. With his dwell-time down to around 0.3 seconds, he is left with two hours and ten minutes of typing. He completed this task from his office chair: a bed that holds his paralyzed body and lies empty only when Eric’s caregivers lift him from it with a battery-powered winch.

[Eric] has made a name for himself as a kind of human cyborg, as technology carries him where his body cannot.

Eric has amyotrophic lateral sclerosis (or ALS), a nervous system disease that weakens muscles and gradually reduces physical movement. Would-be advocates are rendered silent by the condition, their voices trapped and frozen along with the rest of their bodily functions. Most associate the condition with either a chilling bucket of ice water or the moment when Lou Gehrig leaned into the microphone at Yankee Stadium and told baseball and the world that he “might have been given a bad break, but I’ve got an awful lot to live for.”

Eric knows it as the disease that disabled every muscle in his body save those that move his eyes.

About two decades ago, Eric waded into the Bay Area’s burgeoning tech scene and found success working as a self-taught programmer and IT specialist. From his home in Santa Cruz, Eric’s life was quiet and contained, defined by his work of “keeping machines alive” and long afternoons spent surfing. He jokes that these machines are now giving back.

From his office chair, Eric works twelve hour days for nine different organizations dedicated to providing hope and answers for other people with ALS. He’s made a name for himself as a kind of human cyborg, as technology carries him where his body cannot. His eyes have become his voice. Folks caught up with Eric to learn more about his prodigious work ethic and the driving purpose behind it.

Eric Valor before his diagnosis.

Prior to your diagnosis, what did you know about ALS?

I ironically joked about my condition being ALS and saw the deathly pallor which washed over [my doctor’s] face…

Precious little. I knew it was a nervous system disorder which had slowly crippled Professor Stephen Hawking, and that it was named after Lou Gehrig, the famous New York Yankees baseball player. Beyond that, I had no idea what I was facing. During my first checkup with a local neurologist, I ironically joked about my condition being ALS and saw the deathly pallor which washed over her face. I then looked it up online. I can still remember the flood of panic I felt when I realized what I was facing. That’s when I began learning everything about ALS so that I could find a solution to the problem.

I read on your blog that everything you had “built, bought, saved, or enjoyed in [your] life was taken from [you] or consumed by this disease.” It’s difficult to imagine loss of this scope. Could you describe what this looked like on a daily basis?

It happened over the course of about 6 years. Every couple of months, another major muscle group would fail or be very close to it. For the first two years, it was pretty much business as usual. I was still walking and could conceal my condition. I hid carbon fiber braces to keep my feet from drooping and tripping me as I walked. It was only when I was forced to use a cane and then crutches that I could no longer hide it. By that time, the house my wife and I had purchased six years earlier was no longer practical because it was full of stairs. We moved about a mile away to a single-level ranch style house

How did your friends and coworkers respond?

My office was magnificent in accommodating my needs as I became wheelchair-bound. But in early 2008, I could no longer grip a computer mouse and officially retired. The stress on my wife had been growing and compounded every day. In late 2010, she could no longer take the anguish of watching the world which I built around her, around us, disintegrate and she left. We had gone through all the money we had saved paying for 24/7 caregivers, including the equity in our house and we had moved in with my parents. That completed the loss of everything–my car, my career, my lifetime savings, my house, and most of all my marriage. I easily let go of all the material things but the loss of my marriage was a blow from which I am still recovering.

You have two options: Create another life or die. The latter is out of the question.

So what do you do when the life you knew truly no longer exists?

You have two options: Create another life or die. The latter is out of the question. My general practice doctor was helpful in telling me that if I planned to continue living I needed to craft another identity for myself. I have since become an ALS patient, advocate, scientist, and support provider. That gives me plenty of purpose.

Chronic disorders seem to have a way of redefining a person whether they like it or not. Has ALS changed who you are on some fundamental level beyond daily routine?

Eric on tour in Paris.

Yes. I have become a bona fide scientist actively working on a treatment for this disease through theresearch organization I created, something I would never have otherwise contemplated. I have become a quasi-celebrity in the ALS community because of my acquired knowledge which I share and my drive to keep ALS in the public eye in order to drive more demand and donations for research into effective treatment options. My previous life experience and acquired skills have all prepared me for this, putting me in a unique position to drag ALS out of the shadows. Whereas I was perfectly happy with my anonymous little life with an IT career, a wife, and a cottage on the coast, I am now a neuroscientist and a very outspoken advocate for awareness and research.

It’s interesting that you describe yourself as “dragging ALS out of the shadows.” This can’t be easy work. Why is it so essential?

I think it’s very important for me to share my experience so more people understand what ALS is and why research for an effective treatment is so necessary. ALS has about the same incidence rate as Multiple Sclerosis, but because there are several treatment options for MS there are millions of people worldwide living with the condition. And while MS takes between 5-10 years off a normal lifespan, ALS kills within 2-5 years. There is no known risk factor except age, and most people with ALS are diagnosed between the ages of 50-60.

I think it’s also important for me to show other people with this condition that, with a little bit of technology added to their lives, they can go on living and being productive. This is why I call myself the world’s first fully-functioning cyborg. I spent years keeping machines alive and happy – now it’s their turn to give back.

I spent years keeping machines alive and happy… now it’s their turn to give back.

Could you elaborate on the importance of technology to a person with ALS?

For people with ALS, technology like my eye-gaze software symbolizes life. Period. In order to interact with others, express a need, compose a symphony, or answer interview questions, requires communication. Humans require some level of interaction to remain sane. Just ask someone sentenced to solitary confinement. As people with ALS lose their ability to move and to talk, the eyes are usually (not always) spared the paralysis. So technology is our only savior from the ultimate solitary confinement. Three of my close friends who had this condition lost their eye movement and quickly decided to succumb to ALS. Like me, all three were on mechanical ventilation order to breathe. Yet what truly kept them alive was their ability to communicate. If I didn’t have this available, I would have taken a first-class ticket on the Morphine Train to Dirtnap Town some time in 2008.

What does your average day look like?

I work quite late in the night so usually wake up around 12:30 in the afternoon. My morning caregiver turns on my computer and conducts range of motion exercises and stretching to keep my limbs loose. He then pours lunch down my PEG tube while I check my email. I usually answer any questions from other people with ALS and check in on any outstanding business that needs doing in my volunteer groups or my research organization.

Often by then it’s time for my shower routine. My afternoon caregiver and another who comes in to help out with showers lift me out of bed and place me in my rolling reclining shower chair. In the shower chair, I am shaved with an electric razor and given my daily cough-assist therapy. This is a machine with a hose attached to my tracheotomy tube which gently pushes air into my lungs then quickly sucks it out. This simulates a cough, which I cannot do because my diaphragm muscles are paralyzed. I am then rolled into the shower, my teeth brushed, body and hair bathed, dried, and put back into bed where I do all my work and online socializing.

I then get back to work, answering interview questions like these, writing any research papers or blog posts, Quora answers, tweets, Facebook interactions, etc.

Between 3-5AM, depending whether I have my stuff done and have myself shifted over for sleep by my overnight caregiver. I require 24/7/365 caregivers because if something goes wrong with my ventilation machine – buildup of phlegm which must be suctioned out of my trachea and mouth every so often, the air hose pops off, power goes out, anything unforeseen – I need immediate assistance. Any interruption of air flow means I am dead in about 3 minutes.

And then I wake up in the afternoon and repeat the process.Every day is a little different. I can still “travel” online and socialize. My girlfriend and I chat during the day and most weeknights. On the weekend, she comes over and we make cocktails, watch TV shows or movies, and have some quality time.

You seem to approach this work with a profound sense of purpose. What advice do you give people who find themselves in a similar circumstance and are searching for meaning?

With a little technology, we can replace our lost abilities and even improve remaining ones. That’s the job of technology.

For years I had valued the things society tells us to, like money, status, and possessions, and was not satisfied because I was always lacking in “something.” All that stuff I had been seeking were all external validations. Money, status, and possessions are worthless for happiness.

For me, nothing has changed post-diagnosis. I still have purpose. Before my diagnosis, my purpose was to make a happy life with my wife. Things were fairly simple. Now, my purpose is to help find an effective treatment for ALS and along the way share my acquired knowledge and experience with other people with ALS more newly diagnosed so their struggle can be eased.

I tell the newly diagnosed that loss of movement does not diminish us in any way. With a little technology, we can replace our lost abilities and even improve remaining ones. That’s the job of technology. I then try to explain that life can continue if they so desire, and use myself as an example. Life would have a few more complications but they could all be managed. Nevertheless, many still choose to succumb. Each death I take as a personal failure and loss. I continue to be a resource for knowledge and personal guidance for those who choose to remain.

When it comes to maintaining a healthy lifestyle, Shalini Suryanarayana does everything considered right. She eats a vegetarian diet, drinks alcohol only on occasion, doesn’t smoke, maintains an average weight, keeps active, and exercises regularly. In 2012 she was running a couple of miles every day, in training for a team event to raise money for breast cancer.

But when she was struck by a cardiac event that same year at the age of 47, the University of Vermont program director got many things wrong.

“I just wasn’t thinking very straight,” Suryanarayana says.

Heart disease is the leading cause of death in both men and women in the U.S., accounting for approximately one in four deaths nationwide. It can affect people of all ages and ethnicities and can strike with no warning and none of the associated risk factors like smoking, obesity, diabetes, high blood pressure, or depression.

But unlike the chest-clutching pain and squeezing sensation commonly associated with heart attack and cardiac events, symptoms in women can be much more subtle and diverse, sometimes manifesting as a shortness of breath, indigestion, back or jaw pain, fatigue, nausea, sweating, lightheadedness — all common symptoms a woman might easily attribute to more mundane conditions like menstruation, menopause, the flu, or just everyday stress.

In fact, to say a cardiac event “struck” would be an overstatement in many cases. Despite the life-threatening ramifications, cardiac events in women like Suryanarayana can more closely resemble a series of sudden but trivial discomforts.

Shalini and her dog, Budderball.

Despite the life-threatening ramifications, cardiac events in women can more closely resemble a series of sudden but trivial discomforts.

Consider Suryanarayana’s description of events. While out walking her Boston Terrier, Budderball, one day, she says, “I felt a little pressure on my chest, which made it feel like it was a little harder to breathe. But not a huge problem. It would come for a few seconds, and then be gone. Then later it happened again. The only time I had experienced that kind of shortness of breath is when I had an allergic reaction to a medication, so I thought I must be having an allergic reaction to something. I wasn’t worried about it. I just thought, Oh, I’ll go to the doctor sometime next week.”

“But then the next morning, first thing in the morning when I opened my eyes, I woke up experiencing that same shortness of breath and pressure on the chest.”

What Suryanarayana didn’t know at the time was that her heart was struggling to pump blood through an artery that was more than 90-percent blocked. She estimates she experienced, and subsequently dismissed, symptoms for a good 18 hours. But, she admits, “it might have been more than that. Because my symptoms were so mild, I might not have even noticed it.”

Despite a long family history of heart disease, it took the prodding of two loved ones that next morning to persuade Suryanarayana to go to the ER. “I was like, ‘No, I have to do a presentation for work, and I’m supposed to leave in two hours,’” she says. But rather than inconvenience anyone, she insisted on driving herself.

“My poor brother. He was frantically trying to give me a ride, but I wouldn’t wait for him,” she says. “That was a terrible, terrible decision. I put a lot of people at risk if something had happened to me on the way.”

Suryanarayana’s doubts and absence of urgency toward the situation continued unabated at the hospital. Because the pressure she was experiencing inside her chest didn’t hurt per se, she was reluctant — despite the insistence of her brother, who is also a doctor — to term the feeling “pain.”

“I get there, and I’m checking in like normal, and they’re asking me about my symptoms,” she says, “and I said, ‘I guess some people might call them chest pains.’”

They’re asking me about my symptoms, and I said, ‘I guess some people might call them chest pains.’

“I’d barely said the words ‘chest pains,’ and boom! Everybody flew into action. They had people just swirling all around me. And thank God they did.”

Surgeons placed a stent to reopen the artery that had been blocked to allow Suryanarayana’s blood flow to return to normal. “Had I made a different choice at any point in the line, had there not been an experienced person in the ER, my story could’ve been very different,” she says.

Suryanarayana and Budderball have since appeared in local and national heart disease awareness campaigns, and Suryanarayana served as anAmerican Heart Association 2016Go Red for Women spokesperson, sharing her experiences and encouraging women around the country to take a proactive approach to their heart health through regularWell-Woman Visit check-ups. (Sadly Budderball passed away this past December.)

Now a Go Red for Women ambassador, Suryanarayana here discusses with Folks the crucial role genetics plays in one’s health story, how women in particular can balance vigilance with paranoia with conditions like heart disease, and how sharing her story on a national scale helped her overcome the embarrassment she’d originally felt about her condition.

“Had I made a different choice at any point in the line, had there not been an experienced person in the ER, my story could’ve been very different.”

Your mother is one of the first women in your immediate family to live past the age of 45. Is that where a family predilection for heart disease lies?

You know, I don’t know too many of the details. I just know that the women in my mom’s family — several of the people closest to her —all died at about the same time. I remember when I was young when my mom’s birthday — that birthday — came up, she cried a lot. She lost her mother at that age and her sister at that age. It was a powerful day for her. That really stuck with me.

Years later, when I passed 45, it clicked. I remembered that. Not long after that, I had to get the stent. So it really did seem like that [age] was a marker.

Was there any particular culprit that you knew of that affected the women in your family that way?

It’s straight-out genetics. And it turns out it’s not just the women in my mom’s family. Pretty much 100% of the men have had cardiovascular issues. Diabetes and heart disease is just rampant on my mom’s side of the family.

By the time it hit my brother and me, we were both pretty young. But in both our cases, they caught it early and did something proactive. After that our health was actually better than it had been prior. I didn’t have tissue damage because I didn’t actually have a heart attack — I had what’s called a “cardiac event.” It’s sort of the precursor. So once the stent was in, that blood flow was much better. A few months after my event [and stent placement], they measured my ejection fraction [the percentage of blood pumping out of the heart], and it was the same as someone who had never had any issue. We’ve all got something, and in a way I’m lucky because I found out what my something is.

The hours leading up to getting a stent — how you dismissed your symptoms, how you had to be talked into going to the ER, how you kept insisting to the ER staff you were having an allergic reaction — it brings up a larger issue with women’s health. With the laundry list of symptoms that accompany, say, menstruation alone, women get so accustomed to feeling poorly and having to just ignore health issues and work through pain on a regular basis.

Exactly! And some of the other symptoms with heart disease, like lower back pain — women would rarely associate that with a heart problem. And an upset stomach. That could be anything. It’s different for everybody, so unfortunately there’s not a silver bullet or a magic checklist. For me personally, that shortness of breath feeling. I had none of the pain in my left arm like you hear for men. None of those really popular and well-known signs.

With the laundry list of symptoms that accompany menstruation alone, women get so accustomed to having to just ignore health issues…

So with heart disease and the way it manifests, how much do you think relates to how subtle heart attack or cardiac event symptoms can be for women, and how much to how women are accustomed and conditioned to having to just suck it up when it comes to illness?

I don’t know how much of one or the other, but I do know there’s not a woman I know who doesn’t have a pretty high tolerance for all kinds of inconvenient pain and issues for whatever reason, whether they’re trying to take care of their family or their job or whatever. I imagine that is a big driver for why women don’t hit the Pause button and try to figure out what’s going on with themselves. This notion of self-care, I think women struggle with that.We deserve better.

Now I’m so different, though, having had that event. I am so quick to drop everything now and check it out. I’ve not had anything serious since then. But I’ve also learned to get very comfortable with the idea that if it’s nothing, that’s cool. Much better to go to the doctor and find out I was mistaken and it’s nothing, than to not go and to find out I was mistaken and it’s something. I learned the lesson of picking your mistakes wisely.

So with such common heart disease symptoms, how is a woman supposed to tell the difference between warning signs and the usual being-alive issues that happen as a matter of course? How do you balance well-informed caution with outright paranoia?

One thing is knowing your family history, trying to figure out what you might be genetically predisposed to. So if you find out you do have a family history, then you know any of these kinds of symptoms you’ve got to take seriously. Then secondly, it’s being attentive enough to your body, really taking the time to know your body. So that upset stomach that you have? If you can’t attribute it to something you ate, or you don’t have upset stomachs frequently, make a mental note that that’s the first sign. Then that should heighten your vigilance to note any other symptoms. Because it’s usually that combination that would confirm [a diagnosis]. It’s either an extreme version of any one of these [issues] or a combination of them that should set off the red flags.

If you could go back now and talk to yourself back when you were having the cardiac symptoms, what would you tell yourself?

I would’ve taken it a lot more seriously. I really thought I could outrun my genetics just by being careful in all these other ways [like diet and exercise]. I didn’t really understand what that meant, how your body can be wired so that, no matter what you do, certain things might still happen. And I would’ve let someone drive me!

I really thought I could outrun my genetics just by being careful in all these other ways [like diet and exercise].

It can be difficult for people to talk about their health conditions, even among loved ones and friends. Why did you decide to go public the way that you have with yours?

Well, I really didn’t want to. In fact, when they first asked me about it, I thanked them and politely declined. I was in the hospital recovering from the procedure, getting ready to check out, and [the vice president of the hospital] said, “We’ve heard you have a really good attitude. We’re doing this billboard campaign for heart health.”

They said, to date, all the photographs and the billboards had been of older, overweight, white males. He said, “We really want to showcase that heart disease can affect anyone. It would be helpful to have a woman, a person of color, someone who looks younger.” And I said no. I was kind of embarrassed. I felt like, I have this thing that’s wrong with me. Why would I want to broadcast it to the world?

So my brother — he knows me pretty well — he said, “What if you get some woman to go get her heart checked out because she sees that poster and says, ‘Wow, that could be me’?” And I thought, He’s right. It’s really not about me. I shouldn’t get all weirded out and embarrassed about my own situation. Maybe it would help somebody else. So I called that guy back and said, “I’ll do it. But I’m embarrassed about this photo shoot idea, and I have this really cute dog, so if I could bring my dog with me…”

Before you became an American Heart Association Go Red for Women spokesperson and ambassador, was public speaking something you were interested in or comfortable with?

I love speaking extemporaneously. In my work I often have to do presentations, so I was very comfortable with the idea of talking. [But] I’m much more nervous about my speaking engagements for the Heart Association than I am about others. With heart disease, I’m knowledgeable about my own situation, but I don’t feel like an expert in a global sense. I try really hard to make it clear to people that I’m not a medical person, and it’s different for everyone.

This notion of self-care, I think women struggle with that. We deserve better.

And I have to say — I started out by not wanting to speak or to let this be known that I have this issue. [But] after my first two presentations, it was so cathartic. It was like therapy for me to be able to talk about it. Every speech I gave, every time I talked about it, I got more and more comfortable. My first perception was that there is something wrong with me, and as time went on, I realized there is absolutely nothing wrong with me. We all have things. The human body works a certain way, and some things work better in some people than others. It’s not something that you can control in and of itself. Once you know about it, you can do your best to shape the way it progresses. By making good choices, I very likely bought myself a lot of time, and, I think, because my body was stronger, I was able to handle the procedure and recover quickly. But that helped me so much, having accepted that role and learning to talk about it with people. It made me feel much more comfortable with my own situation and with trying to help other people not feel embarrassed or shy about their situation.

Elyn R. Saks was just a teenager when she started believing her thoughts could kill other people. But with treatment, her schizophrenia didn't stop her from living a happy, intellectually-fulfilling life.

One morning, when Elyn R. Saks was in high school, she suddenly decided to leave class and head home. During the three-mile walk, the world around her started “becoming very intense,” and she began to think that the houses were sending her messages: Look closely. You are special. You are especially bad. Look closely and ye shall find. There are many things you must see. See. See.

This was Saks’ first psychotic episode. Her mind quieted for a while and, after high school, she became class valedictorian at Vanderbilt University and received the Marshall scholarship to study philosophy at Oxford. While there, the 21-year-old Saks experienced a complete schizophrenic break. This time around her dark fantasies took a frightening, suicidal cast. She told a doctor that maybe she should douse herself with gasoline and set herself on fire. “That might be best, because I am bad and deserve to suffer.” This episode led to one of two lengthy hospital stays in England. When she completed her master’s degree 1981, she had lost two years to her illness.

At one point, Saks was told that she “would live in a board and care facility and work at a menial job at best.” Today, she is a recipient of the MacArthur “genius” grant, a law professor at the University of Southern California, and a mental health policy expert. Partly inspired by her own experience of being forcibly hospitalized, which she vividly describes in her 2007 memoir,The Center Cannot Hold: My Journey Through Madness, she often advocates for greater patient rights and autonomy.

In Saks’ 2012 TED Talk, she closes by saying that if there were a magic pill that would instantly cure her, she would take it in an instant, but she doesn’t regret the life she could have had nor does she want pity. Says Saks, “… the humanity we all share is more important than the mental illness we may not. What those of us who suffer with mental illness want is what everybody wants: in the words of Sigmund Freud, ‘to work and to love.’”

The humanity we all share is more important than the mental illness we may not.

Here Saks discusses the realities of dealing with schizophrenia, the importance of her husband and friends, and the and the biggest misconceptions about mental illness.

Would you mind describing one of your more powerful psychotic episodes?

It was November, first semester of my first year at Yale law school, and I started slipping. I walked outside on the roof of the Yale law school library, which was flat and safe. Some friends came and I started gesticulating, dancing around, and singing, “Come to the Florida sunshine bush, where there are lemons, where they make demons.” My friends asked if I was on drugs. I said, “No. No drugs at all.”

I had delusional beliefs that I could kill people with my thoughts. And my speech was incoherent. For example, I said “Are you having the same experience I am of words jumping around in our legal cases? Our cases have been infiltrated. We’ve gotta case the joint. I don’t believe in joints, but they do hold your body together.” These are called “loose associations,” where words are loosely associated, but don’t make sense together.

Eventually, we all went home. The next morning, I went to see my professor to ask for an extension and I started behaving the same way. He took me to the Emergency Room, where I was restrained for the first time. It was extremely toxic and traumatic. From there, I ended up hospitalized for five months. That happened around ’82, ’83. I haven’t been in a hospital since then. That is sort of my proudest accomplishment, which is a weird thing to say. You wouldn’t say you were proud of not relapsing from cancer, but I think there are small choices people can make that will lead to better or worse outcomes. Thank God my analysts have all been willing to sit with a certain amount of anxiety about my well being for the sake of respecting my wish not to be hospitalized.

What symptoms of schizophrenia do you still experience?

My husband likes to say that psychosis is not an on-and-off switch but a dimmer. At one end, I’ll have a crazy idea, like I’ll think I’ve killed people with my thoughts, and I’ll recognize it immediately: “Oh, Elyn, that’s just your illness acting up. Pay it no mind.” And then further along the spectrum, say we have house guests. I love my friends but I find it hard to be around people a lot. I may have three or four days when I’m in and out of psychosis. At the far end, I’m crouching in a corner shaking, scared out of my wits. That hasn’t happened in a good decade. I still have some transient symptoms, but nothing really severe or really long lasting.

It’s sort of silly to quantify but, when I was in England, I would say like 70-80 percent of my waking thoughts were psychotic. At Yale, in New Haven, I would say 30 percent. Now we’re talking about three to four percent.

Psychosis is not an on-and-off switch but a dimmer.

How do your husband and friends help monitor your illness?

My husband and my closest friend Steve serve as another set of eyes if I start slipping. I’m very happy to have them involved. Occasionally, one of them will want to call my doctor and I say, “If you want to, that’s fine.” One time Steve called my doctor and said, “Elyn seems really unwell. She’s talking about going to China in advance of your trip to clear out of all the bad people.” To which my doctor responded, “How very considerate of her.”

Do you think having these strong social connections is a big part of dealing with schizophrenia? I imagine it’s very difficult for some people with the illness to maintain those connections.

I’ve been very fortunate. Some of the so-called “negative” symptoms of schizophrenia [meaning behaviors that are absent or diminished compared to people without schizophrenia – ed.] are a lack of relationships, a hard time working, and withdrawal. I’ve been spared those negative symptoms. Having people in my life makes my life much better and gives it meaning and depth. I sometimes have students with the illness. We’ll have lunch and they’ll ask me, “How do you manage to keep your friends? I haven’t been able to.” I don’t really know what to say except that if you are a good friend to people, they’ll be good friends back.

What are some of the biggest misconceptions people have about schizophrenia and those who suffer from it?

First is that we’re violent. In fact, people with mental illness—that’s not just schizophrenia but everything—commit only around two to three percent of violent crime. We’re much likelier to be victimized than be victimizers. I think we need to educate the public that mental illness doesn’t mean dangerousness. The more flamboyant crimes usually do involve mental illness, but those are so rare.

The second thing is that people cannot live independently, cannot work, cannot have relationships, cannot get married, cannot have kids. It’s just not true. A lot of us can do those things.

I think we need to educate the public that mental illness doesn’t mean dangerousness.

I’ve read that, when it comes to treatment, you’re against force being used, for example: to restrain someone during an episode, or to force them to make a decision they can’t choose to make. How should we help someone is who is having a psychotic episode get treatment?

I’m not totally anti-force. I think there are cases were force is needed. For example, if someone’s imminently dangerous, or if they cannot understand their situation and make a competent choice. If my loved one said, “This anti-psychotic medication has really helped me in the past, but I cannot take it now because I’ve been told it will cause a nuclear explosion,” I would want to step in and say, “Give her the meds.”

I’d also like to say that I think force is not good. It causes humiliation and shame. And it’s a very unstable solution because once you stop administering the force the person has no incentive to go back. We should use it as little as possible. What I propose is studying ways to get people to want treatment, so we don’t have to use force. I think that should be a big research focus of psychiatrists and psychologists.

What are some ways to help people want to get treatment?

Well, I want to do a study that has three arms. One will be someone who’s gotten on medication right away and stayed on it. The other extreme would be someone who has resisted medication for 10 years, tried to get off every couple of months, or stayed off for a year or two. In the middle are people who kind of tip. These people start off noncompliant and not wanting medication, and then something happens that makes them want it. I think by studying those three groups, we can learn some of the things that make people tip. Then we can help other people tip sooner and more completely.

Why do people refuse anti-psychotic medication?

I think people refuse meds for all sorts of reasons. One, they don’t like the side effects. But to me, if the choice is between gaining some weight and being psychotic, I’m going to take gaining weight. I gained about 20 pounds. If I gained 100 pounds, I might feel differently. Second, they feel better and don’t think they need it anymore, similar to the way people stop antibiotics before they’re supposed to. Third, they’re in denial that they have an illness.

To me, the most powerful reason [to refuse anti-psychotic medication] is the narcissistic injury of having a mental illness and needing medication. That’s the thing that most affected me. It’s just very painful. I wanted to get off medication to prove that I really wasn’t mentally ill, that it was all some big mistake. Ironically, once I got on the medication consistently and accepted the illness, it became much less front and center. I’ve found that the more I embrace it, the less it defines me.

I’ve found that the more I embrace [my condition], the less it defines me.

There are ways you can encourage people to take meds. Try to get a sense of their needs, wants, and values, and how meds fit into that. For example, I think you can tell people, “Whether or not you’re ill, this med will help you with the restlessness you’re complaining of or the sleeplessness.” There’s a really good book by Xavier Amador called I’m Not Sick, I Don’t Need Help! that walks families through trying to get their loved ones to agree to meds.

What helped you decide to start taking medication?

I always took it, but I was trying to get off of it for about 10 years. Actually, my doctor kind of coerced me. He said, “Look getting off medication keeps you going in and out of episodes. You want to get on with your life. If you want to keep seeing me, you have to take your meds.” Once I got on the meds consistently, my life got much better. I wouldn’t think about going off of them now, because I just have a much better life than when I was going on and off.

What meds are you currently on?

I’m on Prozac for anxiety and Clozapine for schizophrenia.

How has psychoanalysis helped you cope with schizophrenia?

Photo courtesy of the USC Gould School of Law

First, stress is bad for any illness, particularly mental illness. Analysis can help you identify and either avoid or manage your stressors. Second, it fortifies an observing ego, so you can stand back and view what’s going on in your mind and assess it and understand it. Third, it’s a safe place to bring your crazy, violent, and chaotic thoughts, sort of like a steam valve. If you say [these thoughts] in therapy, you don’t have to say them in your outside world. Also, therapy can involve insights. I remember once I was saying violent things and my doctor said, “Elyn I think you’re saying violent things because you’re scared. The violence is your defense against the fear.” That helped make it go away.

Then finally, having a kind, smart, and well-meaning person who accepts you not only for the good but also the bad and ugly is very empowering and helpful. Another way to think about it is that people with schizophrenia have relationship and work issues just like everybody else, and therapy can help with those issues. In the field today, we think not so much in terms of reduction or remission of symptoms, but quality of life. It’s for the person herself to say what that is for her. Therapy can help achieve that.

Do you think that with the right help many other people with schizophrenia could lead similarly high-functioning lives?

I’m doing a study on high-functioning people with schizophrenia with some folks at UCLA and USC. People sometimes say I’m unique, but in fact we fairly quickly got 20 subjects—two MDs, two JDs, Ph.D. candidates, full-time teachers, a CEO of a not-for-profit organization. There are people out there like me. It’s just so stigmatized that they don’t come forward.

There are people out there like me. It’s just so stigmatized that they don’t come forward.

I asked psychiatrist and schizophrenia expert Stephen Marder what percentage of people with schizophrenia he thought were high functioning in our sense, which would be professional, managerial, technical, etc. He said, “I don’t know, Elyn. But the real question is how many could be if we provided proper resources.” I thought that was the right answer. I think it’s a mistake to tell people, to lower their expectations. I think many people can live up to their premorbid potential with enough help and enough support. And it does them a really big disservice to basically tell them to stop trying.

Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. By sharing the experiences of these individuals, we hope to change people’s notions about what it means to be ‘normal’.

Editorially independent, Folks is sponsored and published by PillPack. Part of our mission at PillPack is to create healthcare experiences that empower people. We don’t believe people are defined by their conditions. We pay our contributors, and we don’t sell advertising.